Over 100 people in the UK are diagnosed with MS (multiple sclerosis) every week, and a majority of these are women. We tried several times to write the intro to this guest piece and just couldn’t find the words. Quite simply, this is one mum’s inspiring and empowering story on being a mother while suffering an ‘invisible’ illness. Over to our guest poster…
I have MS. You can’t tell by looking at me. I’m 46 and my son is nearly 9.
MS is a neurological condition. That means it affects your nerves. It’s caused when your immune system isn’t working properly. MS has lots of different symptoms, including fatigue, vision problems or difficulties with walking, but MS is different for everyone.
I was told at one of my early neurology appointments, back in 2006, when I was first diagnosed, that less than 5 years previous women weren’t really encouraged to have children when they had MS. Luckily for me things had moved on.
I was also advised that if I were to become pregnant then it was likely that my body would go into a protection mode whilst pregnant but after the birth I may suffer relapses. I would take the risk.
I found out I was pregnant in April 2008, our baby was due in mid December. I felt great. Honestly I couldn’t be happier, our family was almost complete.
My pregnancy was reasonably normal from what I remember, I had one or two small issues but nothing unusual. The medical teams kept a good eye on us. The birth was traumatic for all of us. My waters broke at home in the middle of a frosty night in December, we went to the hospital and I was admitted, they induced me the following morning. Labour continued all day and into the evening and I got more and more exhausted, along with our baby. I was rushed to the theatre for an emergency C-section. I don’t really remember much of it but my husband said it was a terrifying night. Our beautiful baby had been delivered, I do remember that one of the first things he did was wee on the midwife who weighed and measured him. I was physically exhausted and unaware of the trauma my body had been through.
From that moment our lives changed forever. For the better. My maternal instincts kicked in once I had been put back together and I actually realised that this little human being belonged to us. Just like all new mothers my hormones were raging, I was tired, the feeding wasn’t going as planned but I could cope with these things as long as there were no more MS relapses.
I was lucky. No relapses. Nothing.
Of course I went through the sleepless nights, the crying, the joys, the ups the downs. I returned to work. I got very tired, as all mothers of babies and toddlers and children do. But luckily my positive mental attitude, my loving and supportive family and friends old and new got me through the new journey of motherhood. I learned to cope with more multi tasking, keeping a lid on it, pushing on through. Almost to the point where I’d convinced myself that the medics had made a mistake when they diagnosed me in 2006.
But no. They hadn’t.
My baby grew fast, he was healthy and we covered milestones; teething, potty training, nursery, school choices, school, amongst many other precious events. I chose not to tell many of my new mummy friends about the MS because I simply didn’t want the fuss or the sympathy. I could almost forget I had MS, apart from being fatigued (but isn’t that normal for a working mum?) I continued going to my annual check ups and got to a point where I thought I would be able to skip a year as there was nothing to tell the neurologist. So I did. I missed one year of my annual check up. I knew that I could contact my NHS support nurse at any time if needed to, but I didn’t.
Eighteen months ago I attended my appointment, was sent for scans, blood was taken. It wasn’t good news. I had been having relapses. They had been silent ones, the most dangerous ones. I was at a point where mentally I was feeling as if I was back at the original diagnosis, not really believing it. It was a difficult time.
Various medication was arranged, I’m lucky because not everyone is eligible. It’s not very pleasant, but it’s working. Thank goodness. I have aches and pains, stiffness in my joints, muscular spasms, all of which can be controlled by magic pills and potions. It’s amazing how medicine has moved on.
The baby, the boy now; he’s curious about the blue pills I take every day, and why I get so tired. He’s wonderfully perceptive and sensitive to others feelings, especially mine and his Daddy’s. It breaks my heart that one day I will have to tell him the whole truth. Not just the line that I’ve spun him that I’ve got a few things wrong with my head and that the pills will fix them. I hate the worry that comes with this disease, the unknown, the uncertainty, the black cloud that hangs over us. I hate that he will have this worry, but I love how he distracted me, my beautiful boy. My determination, the organisation, the concentration, the effortless love and dedication that went into his early years. It kept me busy, it kept me occupied, it kept IT away.
MS is a serious condition. It’s complex and different for everyone. It demands attention. It creates incredible frustration. I think that I have put it into its place now after 11 years but I will not underestimate its potential. We have an understanding. What I also understand is the enormous overwhelming power of love that a child can bring. I have perspective. I can put things into an order of importance.
This is my story and it was emotional to mark how far I have come but somehow cathartic. I know that there are many coping mechanisms, mine are, and still are the love of my family and maintaining a positive outlook. The fact is, that my family is the most important part of my life. We created our little family and I will do everything to make ‘us’ my priority. My advice to everyone is make the most of every single precious moment, despite the circumstances.
Tips for living with medical condition… not exclusive or exhaustive:-
- Be as positive as you can
- Be good to yourself, mentally, physically, nutritionally.
- Accept help
- Learn to say no to things that you don’t want or are not able to do.
- Live for today, do things that make you happy.
- Cuddle your loved ones, tell them that you love them.
- Attend all of your hospital appointments – don’t miss any.
For more information and support for MS, go to the MS Society.
Love, the Mother Side xx
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